Saturday, January 5, 2013

My Fiat

I
try to post a picture of Ella on my blog every week, my “MABOP Monday” posts
that always showcase the Most Awesome Baby On the Planet but aren’t always posted by
Monday.I post Ella’s pictures not just
because I love to share her beauty and awesomeness but because they give a face
to the name in all my stories and the reason for this blog.Those pictures help me keep her memory
alive.So each week, if I don’t already
have an idea of which picture I’m going to post, I search through the photos we
have on our computers.Yes, computers.We
have a finite number of pictures of Ella, but they're spread out over three
computers and a memory card or two.Some
are on our old computer, and some are on the laptop I had at the hospital.Where we stored them depended upon where and
when we took the pictures and where we were when we needed to make more room on
the camera’s memory card.Thankfully,
though, most of the pictures ended up on my husband’s work computer.After Ella died, we did our best to
consolidate the photos onto one computer.Even knowing that, though, I have moments of panic when looking for a
particular shot.I panic because I can’t
find it.I panic because it’s not where I
think it should be.I panic because I need to see it; I need to reassure
myself that the picture is still there.God forbid I’ve lost it or it’s somehow been accidentally deleted
because I can never get it back.Those
pictures can never be replaced.My
husband - God love him and his patience with me - bought a thumb drive this
week that has A LOT of memory.He bought
it so that I could have everything Ella related from his computer here at home,
no longer having to rely on his work computer for access to those pictures and
videos.He transferred not only Ella
items but also all the old pictures he had of our boys.It took a while because there was quite a bit
to transfer, thank God.When all was
said and done, I was able to sit down and take a long walk down memory
lane.The older pictures of our boys
cracked me up!They were as cute and
goofy back then as they are now.The
early pictures of Ella…those broke my heart and opened my eyes.She was so small when we first brought her
home!The pictures we have out on the
fridge are from when she was a little bit older, so I think I’d forgotten just
how tiny she was.She was just a wee
little thing swaddled up in her crib, my sweet little burrito of love.And then to see her so small in a hospital
bed with lines and tubes coming out of her…wow.Ella
was six days old when she was first hospitalized, still a newborn really.We have a picture of her from the first
(local) children’s hospital after she was admitted but before she was flown to
a different children’s hospital where she would spend over half her life.She was still in her “I’d rather be in the
womb than out here” mode – legs pulled up, hands balled into fists, face
scrunched up, just so wee.Her pacifier seemed to take up half her face,
it was so big!

Because
she was a heart baby, she was not only smaller than other babies but she also
grew slower.Her chances of making a big
splash on the baby growth charts weren’t helped by the fact that, for the first
part of her hospital stay, she wasn’t allowed to eat.Because of the variety of congenital heart
defects that Ella had and the problems each caused, the doctors had to make
sure enough blood was perfusing to the lower half of her body, including her
stomach.Inadequate blood flow to her
stomach would have caused serious problems, including lack of proper digestion
and possible tissue death.Even when
feeds were started, they were very slow and of very small amounts.So my wee girl stayed wee.She was feisty and awesome and strong, but
she was wee.Looking
through all of those early Ella pictures brought back so many memories and
emotions.They reminded me of how
helpless I felt while Ella was hospitalized – helpless in my complete dependence
upon God and His infuriatingly incomprehensible plan, helpless in my complete
reliance upon all the nurses and doctors to keep me informed of everything that
was going on, helpless in my complete inability to do anything to heal my
daughter.To
feel completely helpless to do anything for your child is a horrible feeling. I never felt more overwhelmed by the feeling
of helplessness than I did one evening when my daughter needed to have her
blood drawn. Drawing blood from a person
isn’t necessarily a difficult task for the average nurse, but when the patient
is a small, newborn heart baby with perfusion issues who’s not only a difficult
stick but is also clamping down [her
already small veins seemed to shrink (clamp down) because it was more important
for her vital organs to get blood than for her arms and legs], then that average everyday
blood draw becomes decidedly un-average.
On this particular evening, several nurses had come into Ella’s room to try
to help. They tried to take blood from several
locations on Ella’s body – hand, foot, scalp.
After quite a long time and numerous failed attempts, the fellow on duty
came in to draw blood from the femoral artery.
An arterial blood draw is never the first option, but in this case after
well over half an hour, several unsuccessful tries, and the angry cries of a very vocal, pissed off baby, it
was the best option.And
all I could do while this was going on was watch, pace, pray, and cry
silently.I did my darndest to not just
sob outright while this was going on, but it was very hard.I could do absolutely nothing to help my
daughter.She was very angry and
agitated.She was screaming and crying,
and I could do nothing to make all the pain and bother stop.I rationally knew that the blood draw was for
her own good and that it was medically necessary, but rational thought doesn’t
mean jack when it comes to watching your baby experience pain.A simple blood draw, yet it still makes me
cry to think of it more than a year later.In
all of the emotion of that evening, I distinctly remember a thought I had that
seemed to come from out of the blue:If this is how I felt
watching my baby girl have blood drawn, if I could feel so helpless as a
witness to her helplessness, so overwhelmed by the desire to stop the pain and
just hold her to me, so primal in my passion to protect her from all harm, then
how much more did Mary feel while watching her Son, her sweet, innocent Boy, beaten,
scourged, abused, taunted, tortured, and crucified, His own blood flowing down
His brow, from His hands and feet, pouring forth from His side?It
used to sort of piss me off when people would say that I could look to Mary as
an example, that she, too, was a mother who had to watch her Child suffer
immeasurably, that I could learn not only how to say yes to God in all things
but also that I could follow her example of grace-filled suffering.I could trust God’s plan and say wholeheartedly,
“May it be done unto me according to Thy word.”In my grief, I would just scoff at that.I would jump past the example of Mary to the make the point that this was different because her Son
chose to suffer.Her Son knew that He would have to suffer and
still chose to go through all of it anyway.My baby, born with a very sick heart, didn’t have a choice.It
took me months to calm down enough in my grief to remember Mary, His mother, who also must have felt helpless
as a witness to her Son’s torture, so overwhelmed by the desire to stop the
pain and just hold Him in her arms, so primal in her passion to protect Him
from all who would harm Him.How totally
her heart must have been pierced by a sword with each and every scourge on His
back, with each thorn in the crown He was forced to wear, with each hammer of
the nails in His hands and feet, with each strangled breath He took while
hanging on that cross.The suffering I
endured watching my sweet daughter experience pain was maybe one-one millionth
of what Mary endured.How humbling to
realize how much pain and suffering her willing and unconditional “yes” to God,
said with total obedience and trust in His word, brought into her own life!Throughout
my own journey with my children, most especially with my Ella, I’ve come to a
certain realization:when I said yes to
the vocation of wife and mother and when I said yes to my children’s lives and
their presence in mine, I opened myself up to the possibility of my own heart
being pierced by a sword.That’s all
well and good when the only pain your children experience is the occasional
scraped knee or bloody nose or when the only things that hurt are their
feelings or their bruised egos.What I
hadn’t accounted for was the deep, soul-crushing piercing that happens when you
spend day and night at the side of your critically ill baby, when you are
powerless to help her, when even your mommy kisses aren’t enough to make the pain go away, and when you can do nothing more than hold her in your arms as she
breathes her last breath, as her heart beats for the last time.Nothing prepares you for the pain of such a
piercing.Nothing.On
January 1, the Catholic Church celebrated the Solemnity of Mary, the Mother of
God, the woman whose unconditional yes to God changed the course of human and
salvation history.I thought that it was
such an appropriate way to start off the new year – remembering Mary, my mother;
contemplating what it means to say yes to God’s call and to His will in my life,
no matter how hard that may be; really thinking about how many times I’ve said
“no, not now, maybe later, it’s too hard” instead of “yes!”; and understanding
that God will not leave me alone or abandon me after I do say yes, that the
strength to do His will does not come from me but from Him, and that I will be
strong enough to do His will if I trust Him to lead me through it.I’m
not making any new year’s resolutions this time around.I guess I could work on being better
organized or on eating healthier.There’s always room for that kind of improvement in my life, that’s for
sure!Instead, though, I’m going to
focus more on making Mary’s fiat my own.I’m going to work on saying yes to God more.I’m going to pray more honestly Jesus’ own words
“not my will but Thy will be done.”And
I’m going to remember that the deepest pain I’ve experienced in my life thus
far, the pain of Ella’s death, a pain that pierced my heart so deeply, came
hand in hand with the most overwhelming joy – that of being the mother of the
most awesome baby on the planet.St.
Ella, pray for us!